Experiencing Loss and Planning Ahead Study (ELPAS)

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The course of dementia over many years, gradual losses and uncertain life expectancy can lead to grief amongst family and friend carers. This study aims to examine the relationship between carers' feelings of grief before the death of a person with dementia and how well carers are prepared for that death. The study involves completing questionnaires with 150 carers of people with dementia (at home or in a care home). Twenty of these carers will be purposively selected to complete additional semi-structured questions to further explore the research questions. The questionnaires will examine whether being prepared for end of life is linked to having lower levels of grief. Preparation will be measured by important factors shown in research including: knowledge of dementia progression; knowledge of the person with dementia's end of life preferences; communication with healthcare professionals; family support; and having a Power of Attorney or advance directives. The study is part of a larger study that will also involve surveys with service providers and developing a resource for carers. The study will provide important insights into how we can better support grieving carers and help them plan and prepare for end of life care.

Marwit-Meuser Caregiver Grief Inventory Short Form (MMCGI-SF) (Marwit and Meuser 2005). 18 items with a score range from 18-90. Higher scores indicate higher levels of grief from carers of people with dementia. There are also 3 subscales that will be used for exploratory analysis; 'Personal Sacrifice and Burden', 'Heartfelt Sadness and Longing' and 'Worry and Felt Isolation'. Each subscale has 6 items with a score range from 6-30 and higher scores indicating a poorer outcome for each subscale.

Knowledge of the person with dementia's end of life preferences [ Time Frame: Baseline ]

Two categorical questions will be used: 'Have you had discussions with the person with dementia regarding their wishes at the end of life? (yes/no). Do you feel you have a good understanding of their wishes for end of life care? (yes/not sure/no).

Advance decisions in place for person with dementia [ Time Frame: Baseline ]

Binary variable - either have or do not have any form of advance plan (such as Power of Attorney, Advance decisions to refuse treatment, Do Not attempt Resuscitation, Advance Care plan) in place for the person with dementia.

Communication with healthcare providers [ Time Frame: Baseline ]

Health Literacy Questionnaire (Osborne et al. 2013). Three subscales: subscale 1 'Feeling understood and supported by healthcare providers'. Average score of 4 items leading to a range of 1-4 with higher scores indicating that the person 'has an established relationship with at least one healthcare provider who knows them well and who they trust to provide useful advice and information'. Subscale 2 'Having sufficient information to manage my health' has 4 items, range 1-4 with higher score indicating person 'feels confident that they have all the information that they need to live with and manage their condition and to make decisions.' Subscale 6 'Ability to actively engage with healthcare providers'. 5 items, score range 1-5, higher scores indicating person is 'proactive about their health and feels in control in relationships with healthcare providers. Is able to seek advice from additional health care providers when necessary…Empowered.'

Social Support for Health subcale of the Health Literacy Questionnaire [ Time Frame: Baseline ]

Health Literacy Questionnaire (Osborne, Batterham et al. 2013) Sub-scale examines satisfaction with support for health from social network. Score is calculated as an average of the 5 items of the subscale leading to a score range of 1-4 with higher scores indicating that a person's social system provides them with all the support they want or need.

Duke University Religion Index (Koenig and Büssing 2010). Using the subscale 'Intrinsic religiosity' which assesses degree of personal religious commitment or motivation which has been more strongly associated with protecting from psychological distress. Possible score range is 0-12 with a higher score indicating a stronger personal religious commitment/motivation.

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Ages Eligible for Study:

18 Years and older (Adult, Older Adult)

Sexes Eligible for Study:

All

Accepts Healthy Volunteers:

No

Sampling Method:

Non-Probability Sample

Study Population

Community sample. Carers will be recruited via a range of services (memory services/clinics, care homes, Admiral Nurses [specialist dementia nurses] and branches of the Alzheimer's Society). Recruitment will also occur through the Join Dementia Research website which is an online register where people living in the United Kingdom can express an interest in participating in dementia research and be invited to take part in studies based on matched eligibility criteria.

Criteria

Inclusion Criteria:

Carers of people with dementia providing practical, social, emotional or supervisory support to a friend or family member. This will include carers of people with dementia living at home or in a care home. Carers will be 18 years of age or over and living in England. The person they care for will have received a formal diagnosis of any dementia related disease.

Exclusion Criteria:

Carers who are not able to communicate in English or who do not have capacity to provide informed written consent.